Prospective validation of the Portuguese version of the PEmb-Qol questionnaire as assessment instrument of quality of life after pulmonary thromboembolism

• Grant number: 19/20887-6
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: September 01, 2020
• End date: August 31, 2021
• Field of knowledge: Health Sciences - Medicine - Medical Clinics
• Principal Investigator: Hugo Hyung Bok Yoo
• Grantee: Ana Clara Ferraz Mesquita
• Host Institution: Faculdade de Medicina (FMB). Universidade Estadual Paulista (UNESP). Campus de Botucatu. Botucatu , SP, Brazil

Abstract

Pulmonary thromboembolism (PTE) is a common medical emergency resulting from the obstruction of the pulmonary vasculature by a clot most often originating in deep veins of the lower extremities or the pelvis. Although PTE has traditionally been considered to be an acute disease, the long-term natural course in patients surviving the acute thromboembolic event can be complicated by recurrent episodes of PTE or deep vein thrombosis, bleeding complications caused by anticoagulant treatment, arterial cardiovascular events and in rare cases by chronic thromboembolic pulmonary hypertension (CTEPH). Quality of life (QoL) has become an important outcome aspect of medical care. QoL can be assessed by generic or disease-specific questionnaires. The latter are more sensitive than generic questionnaires to detect and quantify small changes that are relevant to patients. Disease-specific quality of life questionnaires are necessary to better detect treatment effects and change over time in patients with the same disease. While instruments to measure disease-specific quality of life exist for patients with DVT, the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire was only recently developed to specifically address health-related quality of life in patients having experienced PTE. The PEmb-QoL, originally developed in Dutch and translated into English, is a 40-item questionnaire that measures the impact of PTE on quality of life from the patient's perspective over the past four weeks. A study using the Dutch version of the PEmb-QoL found that patients with PTE had an impaired quality of life compared to the age matched general population. Recently, the Norwegian, French, German and Chinese versions of the PEmb-QoL have been validated and shown as a reliable instrument to measure quality of life and symptoms in patients after PTE. However, the PEmb-QoL questionnaire has not been validated yet in countries outside Europe and China, making its universality questionable due to differing translational, cultural, and methodological factors. Considering that the PEmb-QoL questionnaire is the only validated disease-specific instrument to assess quality of life after acute PTE, we aimed to translate it into Portuguese and to prospectively validate it in a cohort of patients with a history of PTE in Brazil.